Huntington’s Disease and Communication Difficulties

Speech changes are typically mild initially but can get worse over time. Speech can become slurred (if muscles in the face and tongue become weak) or lose its natural rhythm and sound ‘jerky’ (if you have difficulty coordinating your breathing with speech). Some people find their speech sounds a bit flat (monotone) or have difficulty raising their volume. The voice may sound more ‘hoarse’ or strained than it used to. These changes may be mild to start with and people may not have any difficulty understanding what you are saying.

Your speech and language therapist can help identify how your speech has changed and how this affects your day-to-day communication with friends and family. For some, it can be helpful to carry out some regular speech or breathing exercises, or practice strategies to help maintain or slow down the deterioration of the clarity of your speech.

If speech becomes increasingly unclear, it can be helpful to use a simple communication aid such as an alphabet chart. This can be used to support your speech. Sometimes, just pointing to the first letter of a word is enough to help your listener follow what you are saying.

Some general tips for speakers:

  • Avoid taking over background noise eg. TV, other conversations
  • Try to have face-to-face conversations not room- to-room
  • Keep your speech rate slow, use shorter phrases and avoid complex language
  • Introduce the topic you are going to talk about so that your listener is more tuned in. For example ‘dinner tonight – what shall we have for dinner tonight?’
  • Watch your listener – check they have understood what you are saying.

Tips for listeners:

  • Be a supportive listener – assist with word-finding if you can, but without ‘taking over’ the conversation
  • Allow plenty of time for conversations; keeping your own speech a little slower than usual can help
  • If you did not understand, let the speaker know. Ask them to repeat just the part you didn’t hear (not the whole thing) or suggest they say their message again using more simple language e.g. ‘tea please’ instead of ‘I’d like another cup of tea’.

For some people, changes in other skills such as poor concentration and memory, difficulty putting thoughts into words or taking longer to respond to questions, also affects communication. Also, if your mood is affected, there may be times when you don’t feel like talking much. As communication always involves more than one person, the speech and language therapist will often offer to meet with family members or carers, to advise them on ways to support communication. They can help by reminding the person with Huntington’s disease to use strategies that they have found to be effective in the past.

Aids such as calendars, daily diary sheets, ‘to do’ lists can be helpful if remembering things becomes more difficult. Small photo albums or books containing information about your life can be helpful in telling people about yourself and your family. Your speech and language therapist will be available to support you as your needs change and to make sure you always have an effective way to communicate with those around you.